Information needs, communication and usage of social media by cancer patients and their relatives

Abstract

Purpose: The aim of this study was to evaluate cancer patients' need for information, their communication and usage of social media.

Methods: We developed a standardized questionnaire comprising sections on information needs, communication behavior and usage of social media with respect to cancer and combined this with a validated instrument on eHealth literacy for patients. This questionnaire was provided online and with the help of bloggers and leaders of social media groups, distributed in their networks.

Results: The Internet was the most important information source (n = 308; 77.4%). Yet, most of the participants wanted to get information from their doctor (n = 342; 85.9%). With respect to trust in a source of information, oncologists were named most often (n = 285; 71.6%). On the one hand, many participants got in contact with others, especially peers, via social media (n = 319; 80.3%) with a growing bond to their family members on the other hand (n = 324; 81.6%). The cancer diagnosis was an impulse for starting with active participation in social media for some participants (n = 196; 49.2%).

Conclusions: With social media gaining importance as source of information for patients, improving the quality of information in these networks is an important task in health care systems.

Keywords: Cancer; Patient information; Social media; eHealth literacy; eHealth service.

Fig. 1

Topics for information search (n = 398)

Fig. 2

Changes in social contacts (n = 398)

Fig. 3

Acceptance of topics for patient care via Internet (n = 398)

Fig. 4

Usage of electronic health services (n = 398)

Fig. 5

Used health offers (n = 398)

Fig. 6

Self-rating of eHealth literacy by the participants (n = 398)